About CBS

What is CBS?

Charles Bonnet Syndrome (CBS) is a condition where silent visions are experienced by people who don’t have a mental health issue. These visions are sometimes called ‘phantom images’.

Most people who have CBS have poor vision, but it can also affect people who have only slight loss of vision, though this is more rare.

The condition can affect people of any age, but it’s more likely to occur with significant vision loss later in life. CBS can be caused by macular degeneration, diabetic retinopathy or glaucoma and may resolve in instances where the the underlying vision issue can be corrected, such as with cataracts.

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Why does CBS happen?

Though no one knows why, it is thought to be similar to when a person continues to feel sensations and pain from a limb that has been amputated, called 'phantom limb syndrome' - CBS is like a 'phantom vision syndrome', resulting in vivid, complex and recurring visual illusions. These visions can be in the form of shapes and colours, or visual scenes with people, landscapes and animals. Sometimes when faces and people can be seen, they may seem to make eye contact or wear elaborate costumes. While some people describe life-sized objects, others will see things appearing in miniature.

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Is CBS rare?

It is more common than you might think. About 1 in 3 people with significant vision loss may experience phantom visions but many people with CBS never tell anyone about their symptoms and so they never get a diagnosis. They worry that people might think they are insane, have dementia or simply that their doctor might not take them seriously.

You might be diagnosed with CBS if you:

• have seen a complex visual hallucination recently
• know what you saw was not real
• have no psychological or neurological condition to explain the symptoms
• do not have hallucinations involving other senses, such as your hearing

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So what now?

It’s not known why some people will experience phantom images while others don’t.

You cannot prevent CBS but you may notice triggers that set off the condition, for example poor lighting, early mornings, late afternoons, night time, stress, being at home and being tired. If you notice a pattern, you may be able to do something about it.

There is no single treatment for CBS, in many cases some reassurance may be enough to help. Realising that CBS is not a mental health issue may help you live with it.

It can also help to know that for most people, the visions stop within 12 to 18 months.

If you you find the visions are disturbing, to help manage the symptoms you could consider the following:

• Visit your eye specialist so they can monitor your vision, prescribe the right spectacles and remove any cataracts.
• Improve your lighting at home, reduce any glare and use a magnifier for close work. These simple changes have helped some people.
• Contact your local low-vision rehabilitation service provider for assistance.
• Stimulate your other senses, may also reduce the likelihood of symptoms. Activities such as listening to a talking book, exercising, even doing some gardening may help.
• Socialise more or join a support group. Social isolation has been shown to increase the likelihood of experiencing phantom images.
• Where possible reduce stress and anxiety — for example through a hobby or creative activity — since stress tends to make the condition worse. Phantom images can become more intense and occur more often when you are stressed.
• Your doctor may talk about medicines or electromagnetic stimulation (This relatively new treatment increases or decreases brain cell activity depending on the symptoms being experienced).

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Support

It's important to realise you are not alone in this, there are support groups available. You can contact us to find out more or go to our Facbook group page and click join.